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Hi Lisa,

 

First off, welcome to the posts. I don't get to post on here very often but like to whenever possible.

I like you have Polymyositis. Well ok my exact diagnosis is Scleroderma with an overlap of Polymyositis. I know how you feel with the prednizone moon face. Mine has finally gone away. I was originally on 60mgs a day and now am down to 9mg. I am sorry to hear that you have all of this going on. I do hope that they are able to get the right diagnosis for you! The longer it takes it seems the longer you suffer! Just know that you are not alone in all of this.

 

Hugs

Stacey :D

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Hi Stacey:

Thank you so much for the welcome. Wow, you have polymyositis too?? I started with the poly a year ago and am on the prednisone and imuran for that. So far I have nothing for the sclero. I see the gastro-guy in March and the other doctors rheumatologist and neurologist are hoping that he will have the answers. I started at 80mg's of prednisone and am down to 12mg's now. I tried to go down to 11mg's, was dropping 1mg per week but couldn't do it. So stayed at 12mg's and will drop 1mg every 3 weeks. Man it is hard to get down on that stuff! I still have the moonface, was told you don't lose that until you get down past 10mg's. How long have you had the poly? Are you on the myositis group as well? Thanks again - Hugs - Lisa


Life is NOT meant to be a struggle. Life is meant to be joyously abundant.

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Hi Lisa,

 

I have been officially diagnosed with is since August of 2007. I had been dealing with problems with it since November 06. My first rheumatologist ran all the normal tests but didn't find anything. In April my CPK levels were normal but by the time August rolled around they were up to 8,000! It's a miracle I was able to do as much as I was. I haven't joined the Myositis group yet. Please PM me the link for it? Now that I've hit the lovely mark of 9mg of prednizone I only get to go down 1mg a month. That's if my levels stay normal. I don't have many things because of the Sclero yet either. Except for my hands have a little bit of tightening and I now have high blood pressure which my rheumatologist says is from the scelro. Other than that I haven't been affected. Both of my grandmas have Sclero also so I've seen what it has done to their lives. Were you ever on the Methotrexate?

I hope everyone has a great day!

Stacey

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Hi Stacey

I just PM'd you the link to the TMA. It's a good group just like this one. Everyone searching for answers and more than willing to share. - Hugs - Lisa


Life is NOT meant to be a struggle. Life is meant to be joyously abundant.

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